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Lily, I have not personally been to C.C., however my step-mom went their and Mayo both. She lived near Pittsburg, Pa. She went because of CHF(she had a pace-maker) and said both clinic's were helpful and thorough. Sadly, we lost her July 07,she never recovered after open-heart surgery in Pittsburg.C.C. is known more for heart conditions, while Mayo for mysterious illnesses. You see a team of Doctors at Mayo that confer on your problem.The Magee-Womens Hospital at the University of Pitts. Med. Center has a Lupus center.(www.lupuscenter.org) Sorry I could'nt be of more help. Take care, Rosie
 

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Me again, Sorry you keep hitting these roadblocks. My Dad still lives 40 miles outside Pittsburg. When Dad learned from my son that I am struggling more with my breathing(lost 40% lung function thus far due to SLE)my Dad 's doctor called me from Pa. and said because of my family's concern, he could get me into Mayo. I told him I needed to speak to my Rhumy first before I decided. When I spoke to my Rhumy, he said Mayo would'nt do any more for me than what he is already doing.So I did not go. My point of all this is have you discussed going to Mayo or C.C. with your MD and will they make these calls for you? Many doctors have connections to both places thru friends or they have done their residency's there. Could you share with me how you got an appointment at McGee in Pittsburg as I have considered going their myself. Did you just see a doctor or did they do testing and did it involve more than 1 day?
When my Step-mom went to Mayo, she was there for several days and stayed in a hotel across the street. She said they repeated many tests she had already had. If I go to McGee, At least I have a place to stay. Yhanks for any info. you are comfortable sharing.
Good Luck and Best Wishes, Rosie
 

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Thanks for the info.,Lily. I was dx. with SLE 11 years ago, but I believe it began 20 years before that. I always had lots of joint pain , blood in urine, many bouts of plurisy and then dx. with Raynauds. My Md. was elderly and Lupus was not in his vocabulary. I recently found an old medical book from 1975, and it said the life expectancy for Lupus was 5 years. Thankfully, we have made great strides since then. Kidney involvement seems to affect many but some of us do have lung involvement. I was having a CT scan for something else and that is when I was told Lupus had entered my lungs. The sooner you can get a proper dx.,the better. My heart goes out to all of you that can find help in connecting all the dots. Maybe if I had been Dx. sooner, my quality of life would be better. Take care and Please keep me updated on your journey. Rosie
 
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